Saturday, 27 July 2013


ALS is not a disease of location. It doesn't just happen here; it didn't just happen to me. There are people from all over the planet who struggle daily from the damage of this debilitating disease. As a member of a number of online ALS groups, sites such as PatientsLikeMe and Living With ALS, I see posts from every country and continent on the planet. This is a global disease with global impacts yet most of us hear so little about it.

We all know of the famous with ALS, people like Steven Hawking and Chairman Mao. What we don't know are the stories of the thousands of men and women young and old, living lives of struggle and challenge, defeating the darkness and despair that goes with this disease. What we don't hear are the stories of support, caring, giving and loving that make up these lives. They are there, waiting to be written and read.

You will hear about Steve Gleason, Catfish Hunter and, of course, Lou Gehrig. What you are less likely to hear is the story of a young man in Queensland, Australia named David. He was diagnosed as a teenager and recently passed away in his late twenties. He struggled with this disease for his whole adult life, short as it was. You won't hear his story because he is not famous. He, like many of us, was simply part of the ocean of humanity and this is how we die. It takes fame to shine light onto this disease and unfortunately this disease is sufficiently rare that few of the beautiful people are touched by it and even fewer are afflicted with it.

I see the stories of so many ordinary people struggling with this affliction, people who lead normal lives until normal is ripped away from them; a single Mom in BC, a teacher in New York, a geologist in Scotland, a child in Japan, David in Australia. The single, dominant theme I see in virtually all of these stories is the will to live and the forced acceptance of the damage of this pestilence. I hear the stories of their fight, their battle, their small victories in their larger personal war.

The stories of victory are not of cure, but of victory in daily living. It is a battle of honour, dignity and courage. It is not a battle to win for ultimately life claims us all. It is a battle to stay, to live as long as you can, to live fully, joyously, happily. It is a battle won, not with a climactic armageddon but with daily and sometimes hourly victories over this disease. You win this battle each day that you live, love, and laugh.

1 comment:

  1. You are a fighter Rick, I am a supporter. I love you and care that you have as much joy in this life and the same in the next.